Tag: KM Huber’s Blog

In times of loss, I have always gone silent. To me, silence has always been a response but it is only in these later years that I learned to sit silence as a response to loss.

Certainly, silence has been my only response on this blog for well over three months. Almost daily, I posted on Aim for Even. There was the interruption from hurricane Hermine, and there was the first of two hip replacement surgeries.

The surgery went extraordinarily well but the patient lost a way of life, totally unexpected. Loss is often evident to everyone around us before we meet it face-to-face.

And so it was for me with feline EmmaRose. She appeared frequently on this blog, and while she lives still, she lives elsewhere.

My hospital stay revealed that I was no longer able to care for EmmaRose even beyond my recovery from hip replacement surgery. More and more, autoimmune disease dictates what is possible for me. In this case, accompanying anemia keeps my energy level quite low.

This partnership of autoimmune disease and anemia has been affecting my life for some time—quite seriously—yet I chose not to hear what my rheumatologist was telling me. Neither did I sit silence for counsel. Rather, I ignored or reinterpreted every medical pronouncement, an old behavior of mine.

Only in losing EmmaRose did I sit silence. I knew the right thing to do and did it but the right thing is always so hard to do.

Is that because I ignored my intuition, my “gut,” until I could no longer deny it? Or is it because doing the right thing always asks something of me that I don’t want to do.

Good questions, and I will ask them all my life. The answers are time sensitive but the questions are eternal. They allow me to see me as I am; always, it is revealing.

I sit silence, all eyes and ears.

And if I am fortunate, a bit of magic shows itself. I have never doubted the presence of magic. It stays hidden in plain sight, its last protection. As fast as this world whirrs, magic is missed.

So often, we chase what we will never catch. Where is the magic in that? As a believer, I tell you that once you have walked through a magic portal, you will never forget the experience.

Some years ago, I discovered an animal sanctuary, deep in the Florida forest. It is not a rescue or a Humane Society but a farm for medically needy animals to live out their lives in a family setting.

If it sounds idyllic, it isn’t, and to me, that’s what makes it perfect. Not too long ago, I was an administrative volunteer for this sanctuary because its mission is like no other. There are no paid staff and there are two veterinarians on site. And yes, it exists entirely on donations.

Magic always wends its way.

So, EmmaRose, now medically needy herself, returned to where she once lived. Daily, a little girl sings to “her best kitty ever,” as a family helps EmmaRose adjust, again, to life on the farm. At the very least, the scent is familiar as is the love.

And I cry but my tears are more for the joy of the years we knew than for the years we will not know. Love always overflows loss.

No matter how dark the moment, there is always a sliver of light. If I sit silence, the world cracks open just a bit.

I no longer focus on the future, what I may or may not experience. The only life I know is the current moment. It has my complete attention. Even without death, some lives leave us. We never know when we must let go, when we must change.

Sitting silence is immersing myself in the experience of being alive, raw and unfiltered, whether it’s the loss of health or doing the right thing for EmmaRose.

I know that each loss reveals its worth in its own time. And then there is the magic. If I sit silence, I will not miss it. I will not go whirring by.

Every post that appears on this blog bears little resemblance to its initial version. In life, there are best laid plans and then there is what happens.

However, this post is different than any previous, not in substance but in laying out a plan, making a commitment. That’s a bit risky for one who lives life from the eye of a storm more often than not.

My roundabout way is beginning to resemble clickbait so here’s my plan: I created another blog, aimforeven.com, featuring short posts–daily doses I call them–on living life with equanimity. It is a sister blog to this one.

I have given this much thought over the past two years but explaining this commitment remains difficult. And Zen Buddhism isn’t much on explaining. But this I know. Aim for Even rests so comfortably in my heart and so anxiously in my head.

There is nothing for it except to begin, as if there were another way.

Aimforeven.com is a number of moments–365–strung together as a series of blog posts in a cumulative year of days, if not consecutive. I’m working with the reality I have and aiming for even.

My view is from within the eye of a health storm that has waxed and waned for the last 384 days, more or less. Waves of impermanence do not count the days coming or going.

For that matter, days are not what they used to be for me, either, but I have not lost track. If anything, I’m more aware of each day’s presence, even if I don’t always get the order correct.

With each wave comes an awareness not yet imagined. It is mine for the viewing, if I will only look.

To sit within the eye of the storm is to witness the surge sweeping away life options while leaving possibilities never considered or usually rejected.

The current storm is swirling around advanced, late-stage osteoarthritis in both my hips. It is early days in this storm but so far autoimmune disease seems subdued, spinal cord weakness waxes and wanes.

It is the storm clouds of degenerative disc disease that thunder, threatening then throwing lightning surges up and down my legs. Within, rage ultimately gives way to stillness.

It is such an effort to begin again. And I’m tired, really tired.

Within every storm is a sliver of light, and this storm is no different, if I will only look through the life lens. Perhaps it is my fatigue that reveals the world anew this time. I’m never sure what does; I just know it always happens.

Regardless, it takes a while to get used to viewing the forever changed. And there is always some sort of surprise awaiting me.

This time, it is “wheels” to access more of the world around me. Regular errands and daily tasks are easier. I may not have more energy but I am not so tired, either.

This storm is far from over but I take in the view of what other options await me.

In the past, my mind set sail for Aim for Even only to travel off course or simply shipwreck in one convergence after another of my personal, perfect storm.

What is in one’s mind is not always within the life lens of experience. It has taken me a while to explore the view I have rather than search for the one I want.

Now, aimforeven.com is within my scope, equanimity in daily doses, a steady course through any storm. After all, no storm is without an eye with a view.

No day or dose is ever the same, even if the aim is. An evenness of mind opens not to expectation but to experience. Equanimity knows no enemies.

Certainly, the posts are a way for me to reconnect with my online life. Just as my “wheels” allow me access to the world surrounding me, blogging connects me to the immediacy of the virtual world. I have missed both.

Join me on aimforeven.com for a year of equanimity. Stop by KM Huber’s blog for longer observations, the usual fare perhaps a bit more regularly. Each blog site features a sidebar link. After all, they sail within sight of one another.

“Maybe, maybe not” is a phrase I’ve carried with me since first reading Robert Fulghum’s Maybe Maybe Not: (Second Thoughts from a Secret Life). If memory serves, Fulghum focuses on the certainty that anything can happen. In maybe (and maybe not as well), lies the wonder of certainty.

Some 20 years later, I still do not disagree. After all, existence is ever-evolving, never given to any absolute except change. For me, certainty lies in change.

Maybe this is hair-splitting, maybe not.

It is only recently I realized that “maybe, maybe not” is my catchphrase for equanimity. I do not know when that happened but it did. There is an evenness of mind in the seesaw quality of “maybe, maybe not”—at least for me–an ongoing balancing act in meeting life’s experiences.

As Pema Chodron says, “cultivating equanimity is a work in progress.” Indeed, it is. Yet, I find a kind of certainty in creating an environment of equanimity. If anything is certain, it is change; perhaps that is the permanence in impermanence.

Maybe impermanence is the heart of Fulghum’s belief in wonder for no thing ever stays and anything can happen. Maybe, maybe not.

Cultivating equanimity means we respond rather than react to the emotional and physical storms that make up the drama of our lives. If we meet the storms with an evenness of mind, we learn the nature of our pain.

To open one’s self to the fury of any storm—to sit in its eye–is to accept the promise of impermanence, the certainty of change. In acceptance comes the realization that one’s life changes forever. No storm is without its pain yet every storm has its eye.

I am reminded of the Buddha’s words, “I teach nothing but suffering and the end of suffering.” For me, equanimity provides the evenness of mind to accept that pain will always be part of the life experience. But I do not have to suffer. The choice is mine.

We suffer when we are becalmed, wrapped up in our pain, wearing it as our identity. In aversion, we also suffer, trying to outrun or outmaneuver the storm— we may actually do more than once — regardless, we will meet it again, may be different circumstances and perhaps when least expected.

In equanimity, we brave the storm, accepting it will forever change us. We sit in its eye, safe in knowing the storm state always passes, and in its aftermath, we rise once again, buoyed by the energy of existence.

With every storm, there are lands lost to us, yes, but if we sail with the current—an evenness of mind— there are so many new shores to explore, so many experiences yet to come. There is always another sea to sail.

And all the while there is the wonder of maybe, maybe not, a seesaw balancing act, certain to change.

To me, the fest is a celebration of the beauty of being, like walking through the doorway of equanimity to explore compassion, joy, and loving-kindness, the colors of our days.

Each day is a blank canvas, a textured, vibrant explosion of experience, beauty blurring and blending one expression into another. No facet of beauty is denied for that is not the nature of transformation.

Beauty does not reside in a single appearance. It does not live on a pedestal. No one sentient life is worthier than another. The faces of beauty reveal “destiny or fate or meaning, heroes of remarkable stories” (Rebecca Solnit).

Every sentient life is remarkable for it is the only version of that story that will ever be told.

Beauty is not found in a single expression but in every experience of existence in this dimension of sensation. Day after day, the multi-verse expresses itself anew.

It is the nature of beauty to renew rather than repeat or redo. No experience of beauty leaves us unchanged nor does it stay.

There are moments we would hold forever; others, we would avoid if we could. Try as we may, we are not allowed either of these choices.

The beauty of being transcends any framing of or confining to one day, one experience, or one moment. Nor does it exclude. Being is the blend and blur of the events of a lifetime.

We exist in a dimension of sensation, the beauty of being always on the horizon for as long as there are days to experience. In the dawn, we greet the colors of our day:

For nearly four decades, I viewed disability through a lens of limitation. For me, that shutter had only two settings, open or closed, a.k.a. able or disabled.

Some years, I fully embraced the label of disability, assuming it as my identity. And then better health would return. Always, I believed the return permanent, and it never was.

My ego had this to say: “You are better and can do more so do it.” No matter the state of my health, I believed my ego. Sheer stubbornness prevailed more often than not. Yet, disease processes can only be suppressed for so long.

My ego was not without an opinion on poor health, either. “You can get better. You have before. So do it.” Sometimes, remission lasted for years but always, disability returned.

All the while I was struggling with the disability label, I kept accumulating medical diagnoses. I gave them little notice other than to put them in a neat stack for later consideration, which I never did.

Rather, I rode the roller coaster of disability as if it were the only experience of my life. Until one day, not too long ago, I got off. No more struggling to rise only to rush back down. No matter how long it took to climb up, the trip to the bottom never lasted long enough.

Undoubtedly, my ego had an opinion but I did not listen. Rather, I followed my instincts: why not float upon impermanence? Stay open to experience. Meet it with curiosity. Impermanence will take you on the ride of your life.

And then the bottom fell out, as I wrote in my last post almost three months ago. I’m still afloat, which is not easier than riding on a roller coaster just different. I sail with the current rather than setting a course for lands lost or for shores beyond my reach.

I discover myriad angles in the ever widening lens of impermanence, even if the dawning day is dark. Always, there is a sliver of light, and if I’m mindful, I will discover it.

Familiar disease labels are never far off but I do not seek them out or try to steer away. They will find me, and I will meet what they have to offer. Just recently I added a new label, rheumatoid arthritis. It offers yet another perspective on the Zen koan, “The obstacle is the path.”

I stay the course, scanning dark skies for the inevitable sliver of light.

Autoimmune disease— lupus, Sjogren’s, and rheumatoid arthritis— are quite active currently as is spinal cord disease (myelopathy). Working with degenerative disc disease, myelopathy has permanently affected my gait (ataxia) as well as the reflexes in my limbs (hyperreflexia).

Each label is its own lens of limitation. To attach to a label or to avoid it will not change the experience it brings. Labels float in and out of life. I aim to let them do just that.

The C2-C4 donor bone fusion is still “not taking” but “my films look good” my neurosurgeon tells me. The fusion hardware holding the donor bone in place can last as long as 10 years. Even autoimmune disease is doing its part as it provides more than enough inflammation to assist the fusion process. My neurosurgeon remains optimistic and so do I.

Sliver of light in a sea of labels.

All of my medical practitioners support my daily, gentle yoga practice, no matter the disease experience of the moment. Not every day am I able to perform each yoga pose completely but every day I practice yoga.

In yoga and meditation, there is only the lens of impermanence, a mindset of acceptance that no thing ever stays or is ever the same, no matter how many times met. I agree to medications that I once rejected: a weekly dose of methotrexate and a small, daily dose of prednisone. The methotrexate requires monthly blood test monitoring.

Inflammation may be assisting the donor bone fusion but it is damaging my joints and tissues. Accepting the medication is as essential to maintaining my independence as are yoga and meditation. In an open-ended mindset, labels pass freely.

In every moment there is movement, a breathing in only to let go.

As in meditation, the breath in yoga is critical to sensing the body’s signals. With my breath I soften the pain of movement, all the while experiencing its energy. Every day is a new communication with the body, no matter how many yoga poses I complete or how long I meditate.

Even on those days when there is only a sliver of light, the impermanence of each experience is worth the ride. After all, I am looking through an ever widening lens with myriad angles.

Recently, I received some unexpected health news, which is why there has been a longer break than usual between posts. Just as I was getting ready to resume regular posting, everything changed.

Impermanence is like that.

The bone graft in my cervical fusion—C2–C4— is not fusing. There is no healing; the graft is not “taking.” Initial x-rays seemed to reveal healing but x-rays taken six months later do not.

You might think that after nearly 40 years of dealing with chronic illness and disability, I would take this news in stride. I did not. I was devastated. Myriad scenarios, all of which began with “what if,” descended.

I buckled under the weight. The bottom of my world fell through. I found myself in the depths of my vulnerability. I cried. A lot. Rarely have I felt so hopeless. As I wrote to a friend, “I really wanted to beat this.”

Ah, but I am not in a race.

I am experiencing life as a human being. My life is not a race against chronic illness or disability—it is not a competition on any level — it is a moment of life, one stitch in the tapestry of existence.

To live, to be a stitch in time, is to be vulnerable. Let me not build “castles in the air”; let me “inhabit” my vulnerability.

The only choice we have as we mature is how we inhabit our vulnerability, how we become larger and more courageous and more compassionate through our intimacy with disappearance….

David Whyte, Consolations: the Solace, Nourishment, and Underlying Meaning.

I had to become comfortable with my vulnerability. Although it runs deep, so do the wells of compassion and courage. And from them, all I had to do was drink. Vulnerability connects us with one another but it is courage and compassion that reveal us. They keep us fear-less.

I am not seeking the pot of gold at the end of the rainbow. It may or may not be there. I am experiencing my life as it unfolds, putting a foundation beneath my castle and inhabiting it.

The bone graft fusion in my neck—C2–C4–is not fusing is a thought never far from my mind, a frequent visitor during my morning meditation, accompanied by fear in all its forms. Words weave in and out, some wounding and others opening old scars.

It is a circle of wolves. I feed each one.

I sit in my vulnerability as I observe all the reasons the bone graft is not taking. There is the donor bone, possibly not a good match, always an unknown.

I was not the best surgical candidate. This was the fourth surgery on a spine with degenerative disc disease. And after nearly 40+ years of autoimmune issues, my bones may just not be good enough for that donor bone. After all, my cervical vertebrae did pinch my spinal cord.

My breath brings me back to what is.

In this moment, a metal plate and four screws are holding the vertebrae and donor bone in place. This is my reality, not what was or what might be.

A silent wolf patiently awaits the stillness. There is a possibility—a long shot–that the graft may take two years to fuse. No one gives this wolf much attention but I feed it as much as I feed the others.

The wolf demanding the most attention concerns the low dose of prednisone I am taking as well as the limited, over-the-counter anti-inflammatory medications. Neither of these is a surprise nor a secret– each reduces my pain level and keeps me mobile–together, they are now viewed in a new light.

It is possible the autoimmune disease medications reduced the level of inflammation so the fusion cannot take place. Without the medications, my mobility would be so limited it would slow if not stop the fusion from taking place.

It is my neurosurgeon, the reader of x-rays, who says so succinctly, “you are between a rock and a hard place.” Indeed. Autoimmune disease versus spinal fusion. Which one do you feed?

Mine, however, is not to look for the fringe of the future. Rather, I inhabit my vulnerability, exploring the reality I have. The balance in the circle of wolves remains fluid.

Daily, a new experience awaits me. I sip from my wells of courage and compassion, content to reside in my castle of vulnerability. And like everyone else, with each experience I become more intimate with disappearance, the exit each one of us will take someday.

I did not immediately recognize the connection between the way I dry laundry and the way I write. There is a bit of forever about the time it takes damp laundry to dry in a subtropical climate. As well, for some time I have been content to let my sentences grow at will. For both, time seemed not of the essence.

Repeatedly, I assured myself that sentences would be trimmed, ordered. Some words would not survive the page, as always. Laundry would find a fold or a hanger in a drawer or closet. Well, of course.

Impermanence does wend its way through laundry as easily as it does through words. Yet, I suspected I was trying to catch it on a shirt or in a sentence, trying to hold a moment longer than it lasts.

I was.

Laundry does dry, and if it is a high plains desert climate— a mile high and more— it dries quickly, reflecting the scratchy, arid climate. The soft, pliable cloth of a subtropical climate leaves just a hint of moisture.

Note the Wyoming Flag filling out the State of Florida

Regardless, a moment lasts only a moment– a routine of no routine–endless and timeless. It is for me to work with the reality I experience as it presents itself. It is the stuff of choices.

I decide the laundry will finish drying on my love seat, recliner, and every available piece of furniture/doorknob. I save $1.25 in quarters but it seems I always receive more than I give.

Feline EmmaRose revels in “laundry days.” At less than 5 pounds, she can sneak in, under, over and around almost any piece of laundry. It gives her such joy to explore her landscape in a new way.

Her joy is not lost on me. I am aware of words left here and there in moments already passed.

As ill as I have been this past year, most of my writing has been recording details and research. Deliberately, I was not attaching any feelings to those events. That would come later.

Yet, the laundry did dry as later passed. Both laundry and words were taking up space that EmmaRose and I do not have. We share two rooms and a bath. We’re full up.

As I folded laundry, I reached for a pair of socks, a Christmas gift. One sock is a list of banned books; the other is the world with those words, peaceful and rebellious.

A moment lasts only a moment, long enough for the world to change, and there is nothing comfortable in that. The comfort comes in recognizing we, too, are capable of change.

The laundry can only lie around so long. And so it is with writing.

Physically, the way I am able to write is both new and old. I’m no longer sure what tool will be required on any given day. It is its own routine of no routine, as it always has been.

If the “obstacle is the path,” and I suspect it is, a broader perspective can only mean another way to view the obstacle. A new angle, requiring new tools as well as new ways to use old tools.

I no longer type to write–mostly–I use voice recognition software. I decided it is more important to use my hands for chopping vegetables, picking up a capsule/tablet, and measuring a half milliliter of liquid prednisone in a syringe for EmmaRose.

There are no medications for my motor control, hyper-reflex, and nerve damage issues. My mind-body works with each signal or lack of signal. It is a lesson in letting go.

Some kind of sensation is evident in my fingers and thumbs, different and worth exploring. It is as if through the gnarled roots of tingling/grittiness/numbness, there is life.

Once again, I receive more than is asked of me.

In using voice recognition software, my thoughts— air abstractions—become concrete representations through speech, a tool once reserved for conversation. It is a new role. This, too, feels like life.

The physical sensation of fingers on a keyboard is a different creative process than speaking those same thoughts. One is halting, dependent upon a stroke or even a missed key; the other is expansive, born free of grammar, ever ready to roam.

And then there are completely new tools. When I updated my voice recognition software, I received a Digital Voice Tracer. It transcribes my thoughts/research notes into a text document. It is remarkably accurate.

The Tracer will fit in any outstretched hand or most any pocket. It takes up just a little space on the nightstand, ready to capture ideas as they occur. Well, almost. There is always that moment in between.

It is more than I was able to do before, once again.

And I have returned to using a chalkboard, 35 x 23. I suspect I still cling to a physical way of writing; the chalkboard provides connection. Ultimately, what is written in chalk dust finds its way to my laptop through my digital voice tools.

Clean Slate at an Angle

Like EmmaRose, I, too, enjoy a change in the landscape of our apartment. I sit on the floor with chalk and my board, drawing connections between pieces of writing. I get another visual of words working together.

I had given up this practice of sitting on the floor with my chalkboard. But in viewing my obstacle from a new angle, solutions once unlikely, reappear. Like walking in the air, it just a matter of taking the first step.

Of course, the chalkboard is great for hanging laundry. As one set of thoughts turns to dust, another lies in wait. It is never-ending.